Joanne Hughes

I've always had an interest in human biology, anatomy and physiology, and healthcare. The sciences were my favourite subjects at school, the basis of my A Levels, and Health Science made up the majority of my degree.

Before having children I was a senior Pharmaceutical representative, a job that required a deep understanding of the structure of the NHS, the roles and responsibilities of staff within it, and their pressures and needs as they tried to do their best for their patients.

In 2009 Jasmine came along. My longed for first baby. I made the decision to be a full time Mum, just until she (and hopefully one other) started school. I absolutely loved being at home with her. I wasn't bored or intellectually unstimulated as people suggested I would be. We kept busy, going to lots of classes like swimming, tumble tots, sing and sign, messy play, and other baby and toddler events. had a great network of other Mums around me and we got out and did stuff all of the time.

As with all parents, I loved Jasmine more than life itself.

At the end of 2010 and into the beginning of 2011, she got poorly. You can read the full story in the patient stories section. On 15th February 2011, after many failures in her care, she died in my arms after life support was withdrawn. I wrote ablog piece about that day, you can read that here.

I knew there had been errors. I got hold of the medical records as soon as I could, and to my horror, I discovered major communication breakdowns I was certain had contributed to her death. I also knew, that the medication she'd been given to treat her illness had harmed her. I found information I felt relevant to that too.

In full belief that my concerns would be taken very seriously and investigated, I informed the staff involved what I had found and what I was concerned about.

I had no idea I was beginning an 8 year, hellish journey, to have what happened to Jasmine acknowledged, apologised for, and learned from.

The experiences, insight, knowledge and expertise I have gained, over the last 8 years places me in a unique position to be able to know, instinctively, what families need when a tragedy like this occurs and to work towards achieveing that.

But I want to drive the changes needed to avoid tragedies like these from ever happening in the first place.

For the past few years I have given my time to bring the Parent / Patient Voice to a great number of initiatives designed to improve the safety of future children. I am certain that without the insights and expertise I bring to these projects, the outcomes would not be as good.

Today, I am a recognised and respected 'Patient Voice' in the world of Children's Patient Safety and, whilst proud of all I've done so far I have drive, enthusiasm and ambition to do so much more.

I miss Jasmine every day. The pain I feel continuously from being cruelly separated from her has never lessened. My work through Mothers' Instinct helps me 'stay standing', meeting and working with other families who have suffered the worst and are striving to make a diffence in their child's memory; kind, caring, committed, clever NHS staff who want to drive safety improvement and see the NHS respond more humanely when the worst happens; people from charities focused on patient safety and learning, and academics researching and developing new patient safety ideas and initiatives.

They say you've got it right if your work brings you joy and is meaningful. Jasmine gave me so much joy when she was alive. Sharing her story, creating a legacy for her, using the expert knowledge I've gained from my experiences over the years to drive change really matters to me. There is no role that could bring me satisfaction anything close to that which I feel from striving for improvement in her memory. I can give my other three children, Ben, Tim and Emmy, my love, attention, and affection every day. I can hold them close as much as they'll allow. And with Mother's Instinct, I can hold Jasmine close too